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Wednesday, March 31, 2010

Marlee Matlin (pictured) had an idea for a reality show that she hoped would bring some insight into the lives and struggles of deaf people and how they cope. But while reality TV has brought us wife swappers, party girls, aging rock stars and dieting divas, apparently no one was ready for something that real.

So instead, the hearing-impaired actress who won an Academy Award as lead actress for her role in "Children of a Lesser God," took her show "My Deaf Family" to Google's YouTube. You can watch it here.

"Deaf and hard of hearing people make up one of the largest minority groups," she said in an interview through her interpreter, Jack Jason, "and yet there has never been a show, a reality documentary series that features what life is like for them." Matlin financed the show, which tells the story of a family in Fremont, Calif. All the family members are deaf, except for the oldest son, Jared, and the youngest, Elijah. It is narrated by Jared.

Matlin shopped her pilot to network executives, who purported to "love it." But none would take the plunge."They didn't quite know if they could pull it off, or even how," Matlin said.

Refusing to give up, Matlin turned to the Internet, more specifically to YouTube, the world's default broadcaster of Web video.

"I didn't want to wait for the networks to warm up to the idea of whether the show would be a hit or not with audiences," she said. "So I decided to put it out there on my own terns. YouTube is akin to having my own [TV] network."

There's another reason Matlin chose YouTube. The Google subsidiary in November introduced an automatic captioning system for its videos. The system is a mash-up of Google's speech-to-text voice recognition technology used in Google Voice and captioning software that syncs the text with the video.

Right now, the experimental program can only recognize spoken English, but once transcribed, it can translate the text to 50 different languages.

"Google’s mission is to make all the world’s information universally accessible," explained Ken Harrenstien, the software engineer who led the captioning effort. "We’re about accessibility to everyone for everything."

Because YouTube is inundated with a constant stream of videos (about 24 hours of videos are uploaded to the site every minute), it does not automatically caption every piece that comes along. Instead, viewers have to request that a particular video be captioned. Once the request is made, it takes about 24 hours to deliver the captions.

Harrenstein cautions that the captions aren't going to be perfect. Ambient noise can affect the translation. But the software is also prone to error. YouTube is hoping that the owners of the videos will upload corrected captions through a quick process it has designed.

That's good enough for Matlin, who said, "The process isn't 100% there yet. But they've done it. And that's a good thing."

Tell us about the show you're premiering on YouTube. What's the premise? What's your involvement with it?

Matlin: My intention was to do a show unlike any that's ever been seen on television; a show about what life is like for 35 million Americans who are deaf or hard of hearing from the perspective that everyone could identify with: a young 15-year-old hearing teenager. It's called "My Deaf Family," and that pretty much sums up in the title what the show is about. I like to think of it as a deaf/hearing version of "Little People, Big World."

It was an idea that grew out of my own family (I have 4 children who are hearing, and I'm their mom who is deaf) and the experiences of my business partner and interpreter, Jack Jason, who is hearing but who grew up with deaf parents. I produced and financed the pilot and shot it fast -- in one and a half days with the help of a great director, Donald Bull, who has a list of credits longer than my arm in the reality / documentary arena.

How did you come up with the idea for the show?

Matlin: After I did "Dancing with the Stars," several networks approached me about doing a reality show about my family because I'm a crazy deaf mom. Unfortunately, my husband works in law enforcement and we were concerned about security, so we set out to find another compelling deaf/hearing family to do a documentary reality show about. We found the family we wanted, on a fluke, from a friend of Jack's who also grew up with deaf parents.

Deaf and hard of hearing people make up one of the largest minority groups in the USA and the world and yet there has never been a reality/documentary series that features what life is like for them on a daily basis. After doing a nationwide search, we hit upon the Firl family of the San Francisco Bay Area.

The Firls have an interesting background. The mom and dad both work at the largest schools for the deaf in the country, the California School for the Deaf, a fascinating community unto itself in Fremont, Calif. Everyone signs there -- baristas at Starbucks, gas station attendants. It's just wild. Our pilot episode even features a deaf basketball tournament with cheerleaders from all over the country who are deaf. It kind of feels like a sign-language version of "Glee"! All of this is told from the perspective of one cool teenager, Jared, who is 15 and who is hearing. I've just never seen another show like it on TV!

Did you shop it around to the various broadcasters? What was the reaction?

Matlin: The network executives loved it. The reaction couldn't have been more positive. But as is the case with me and a lot of ideas that I've pitched over the years involving story lines with deaf characters, they didn't quite know if they could pull it off or even how.

I assured them that, having been around for 25 years in the business and watching how it was done on shows like "Picket Fences," "Seinfeld," "The West Wing" and "The L Word," we could do it. But they balked. I even said it worked in reality TV, as demonstrated when I hosted "Extreme Makeover: Home Edition" and, of course, "Dancing With the Stars." But they still hesitated because they had no idea how an audience would react to characters signing with voice-overs and occasional subtitles. Anyone who watches reality television will tell you that they employ subtitles a lot for dialogue that's difficult to catch on the fly. But I wouldn't give up.

So you went to YouTube. Why?

Matlin: I didn't want to wait for the networks to warm up to the idea of whether the show would be a hit or not with audiences, so I decided to put it out there on my own terms. YouTube is akin to having my own network. After a small initial outlay, I am putting the show out there myself for all to see, hoping that the reaction will be great and that sponsors and networks will see that the show can work. Plus, the show can be viewed worldwide on YouTube, an audience greater than anyone could imagine.

Will you be doing more with YouTube? Have your own channel on YouTube? Air more episodes? Or just this one?

Matlin: This is my pilot. Hopefully the reaction from viewers and word of mouth will be positive. We have plenty of episode ideas in the can and ready to go at a moment's notice. And the family is ready too.

Tell us a little about the state of closed-captioned content.

Matlin: You'd be shocked to find out how much of what is already captioned on TV is not captioned when it moves to the Internet. Popular broadcast shows and movies have their closed captions stripped when they go to the Internet. Even worse, it appears that the motivation to provide access for millions of viewers who rely on closed captions for access -- also for people learning English as a second language, children learning how to read, not to mention people in noisy environments -- is just not there.

Just like in the early days of captioning when I had to go Capitol Hill and force broadcasters to provide closed captions through legislation (and won), it looks like the battle has to be fought all over again with broadcast content that is moving to the Web. Google, as usual, is one step ahead of everyone and provided the means where all videos on YouTube can be automatically captioned through voice-recognition technology without having to be told that it's the responsible thing to do.

The process isn't quite 100% there yet. But they've done it. And that's a good thing. Now I'm waiting for the other content providers (I won't name names, but let's say it's about 99% of websites that provide streaming video content as well as video on demand) to follow Google's example.

What's your goal with this show? Do you want a broadcaster to pick it up? Do you want to just keep the show exclusively online?

Matlin: To make good TV with characters you've never seen before but which you can easily identify with. Isn't that what it's always been about? And yes, I'd love for a broadcaster to pick it up. I guess in this world where economics, number crunching and demographics are what drive decisions, you have to roll up your sleeves and find other ways to prove that your show is good TV. I wouldn't mind an exclusive online agreement or network agreement, as long as I can find the means to tell more stories about this fascinating family.

Do you want to make money on the show as part of the YouTube partner program? Or do you see it mainly as a marketing vehicle for your show?

Matlin: Much as I wish I could, I'm not a wealthy millionaire who can fund my own studio and productions, creating shows out of my own pocket that I think people would like to watch. I do have to earn a living as an actor and producer, and I thought this was the best way to do it.

I viewed this process much like what Lucille Ball did way back when she created "I Love Lucy" with her husband, Desi Arnaz. She told me once that the networks balked big time when it came to casting her real-life husband, Desi, as her TV husband. No one wanted to watch a guy with a Cuban accent on TV.Without any network interested in financing the production, Lucy and Desi took their show out on the road and sold it to America their way. We all know the rest is history.

I wouldn't be so bold as compare my show with "I Love Lucy," but the idea is still the same. At the end of the day, "My Deaf Family" is about a typical family that all of us can identify with but told from an unusual and what I believe will be a fascinating perspective. I just have to find the way to sell it and convince people this is what people want to see.

From Federal Times. In the picture, Andrew Pike, an Army veteran who was shot and paralyzed in the Iraq war, watches his new service dog Yazmin pull a door open.

The federal government is not doing enough to attract, retain and accommodate employees with disabilities, according to a survey released March 29.

More than one-third of managers aren't familiar with special Schedule A hiring authorities that allow them to hire people with disabilities noncompetitively, according to the survey of 513 federal managers and hiring officials. And 58 percent of managers surveyed aren't familiar with an executive order from 2000 that ordered federal agencies to increase employment opportunities for disabled people.

The survey was conducted online earlier this year by the Telework Exchange, a public-private partnership that promotes expanded federal telework, and the Federal Managers Association.

More than two out of every five federal managers have not received the right training to effectively manage or retain employees with disabilities, according to the survey. Necessary training could include how to use hiring flexibilities, recruitment strategies, and how accommodations such as teleworking can help disabled employees be productive.

But while 71 percent of those surveyed said their agencies are committed to hiring people with disabilities, the survey concluded that "feds are not prepared."

The government needs to make sure managers are really committed to hiring people with disabilities, better monitor agency progress, better train and educate hiring and program managers, and offer improved physical and technical accommodations, the survey said.

"Accommodations alone will not enable Americans with disabilities to reach their full potential in the federal workforce," the survey said.

The percentage of the federal workforce with targeted disabilities — deafness, blindness, missing limbs, partial or complete paralysis, convulsive disorders, mental retardation, mental illness and limb or spine distortions — dropped from 0.96 percent in fiscal 1998 to 0.92 percent in fiscal 2007, according to a report issued last year by the government's National Council on Disability. The number of those employees declined by more than 14 percent over that period, from 28,035 to 23,993.

And 60 percent more people with disabilities leave the federal government as are hired each year, the council said last year. In fiscal 2006, the government hired almost 1,300 new employees with disabilities, but almost 2,100 employees with disabilities left that year.

About 12 percent of Americans who are between 16 and 64 years of age have disabilities, according to the Census Bureau.

Deaf actor Howie Seago knows how hard it can be for deaf audience members to experience plays at the Oregon Shakespeare Festival.

"I've had to hassle with reading scripts with a small light to follow the plays," Seago said in an e-mail sent in-between performances of "Hamlet," in which he plays the ghost of a murdered king.

Seago said he is pleased by OSF's growing efforts to offer captioned plays for the deaf community.

During the 2010 season, OSF is offering an all-time high of 11 captioned performances for deaf and hearing impaired audience members. The captions appear on a light emitting diode, or LED, board that is set up near the bottom of the stage to the audience's left.

"There are more and more deaf people becoming interested in the OSF shows and it is great to offer them the flexibility of when to see them," Seago said. "I, myself, will be now able to easily access the other shows I'm not in."

Seago recently attended a captioned performance of "Pride and Prejudice." He said it was a nice treat to be able to access the language of the play, which is an adaptation of a novel by Jane Austen.

OSF had its first foray into captioned performances in 2007, when it had captions for a play reading in the Angus Bowmer Theatre, said OSF Access Coordinator Jim Amberg.

In 2008, OSF hired David Chu to create captions for three performances of plays, Amberg said.

Chu is the co-founder of the nonprofit group c2, which has pioneered captioning for live performances nationwide.

With some experience in captioning under its belt, OSF bought an LED board and decided to have in-house staff do captions for the 2009 season, Amberg said.

That effort is continuing for plays in 2010.

Creating captions for 11 performances this year is no easy task.

Scripts have to be stripped of stage directions and everything else that is extraneous to what an audience should read in the captions during a play, Amberg said.

Then a computer program breaks scripts into 26-character lines, but it's not able to divide phrases and punctuation in a way that would be logical for readers. For example, it might separate a period from the sentence to which it belongs, Amberg said.

So humans have to step in.

"It takes a tremendous amount of adjusting the script. It takes hours and hours and hours of massaging the text," Amberg said.

To use the finished captions in a performance, an OSF staff person sits in a booth behind the audience with a laptop and manually pushes the "enter" button to get each short block of text to appear on the LED board, he said.

The person tries to push the button just as an actor says a line so that lines don't appear before the actor speaks, he said.

Amberg was the person pushing the button for a recent captioned performance of William Shakespeare's "Hamlet" in the Angus Bowmer Theatre.

"'Hamlet' has 6,300 of the 26-character lines. I pushed the 'enter' button 6,300 times. You cannot lose your focus for one second," he said.

Amberg also does audio descriptions of the action in plays for blind and visually impaired theater-goers. He said that doesn't require the same level of intense concentration and effort since he can have pauses during a play.

OSF Membership and Sales Manager Eddie Wallace, who sits on OSF's Accessibility Committee, said open captioning can help not only deaf and hearing impaired audience members, but anyone who has a slight hearing loss or difficulty hearing at the theater.

"With the graying of the baby boom population, we think that this is a service that will continue to gain popularity as a large segment of the population ages and confronts hearing loss," Wallace said. "Many people aren't willing to admit they need a hearing aid and this service could help them as well."

He said opera companies added supertitles to their productions years ago.

Supertitles are like the familiar subtitles in foreign films, but they appear above the stage for operas that are staged in Italian, French, German or other languages.

Wallace said purists thought the supertitles would ruin opera performances, but now they have become the norm.

Providing captions for performances in the theater world is becoming more common — as evidenced by the fact that Chu's c2 nonprofit group has helped provide captions for more than 800 theatrical performances in over 180 venues across the nation.

However, the practice is still relatively rare.

"We are wondering if perhaps we are at the vanguard of what theatre companies may be doing as a regular service years from now," Wallace said.

OSF has had several of its open captioned performances already and has scheduled additional ones, including:

An innovative iPhone application that allows people to check their hearing has been launched by the Royal National Institute for Deaf People (RNID).

The scientifically verified Hearing Check app measures a person's ability to hear someone speaking when there is background noise, similar to being in a crowded room.

The charity, which represents the nine million people in the UK who are deaf or hard of hearing, said hearing loss can have a profound effect on a person's life. However, it can take up to 15 years for someone to take action about their hearing loss.

The new app is a version of its online PC or phone-based technology, which has been used by more than half a million people to check their hearing so far.

Jackie Ballard, RNID's Chief Executive, said: "This is a fantastic new way to encourage people to value their hearing and check it regularly. The Hearing Check application offers quick results and confidential advice from anywhere with a decent phone signal."

The RNID hopes the free app will encourage the 40 million iPhone users worldwide to check their hearing is within the normal range.

The Hearing Check app for the iPhone, iPad and iPod Touch can be downloaded from the Apple iTunes app store, from the RNID site and Facebook.

An ongoing joint study between Rutgers University and Indiana University professors is researching new ways to help those with cerebral palsy disorder.

The study, which has been going on for a year, includes three teenagers with cerebral palsy disorder, ranging between the ages of 13 and 15, who used a modified Sony PlayStation 3 gaming glove to perform dexterity exercises in the form of games.

Grigore Burdea, a University professor of electrical and computer engineering said the new method might allow patients to rehabilitate without the need of professional supervision.

“[Hopefully] it will become a product that people will take to their homes. The future of therapy is not in the clinic,” he said. “Entertainment is moving to the home, work is moving to the home, then why not move therapy to the home?”

Cerebral palsy disorder is caused by damage to one or more specific areas of the brain, usually occurring during fetal development. The disease disrupts the brain’s ability to adequately control movement and posture, according to the United Cerebral Palsy’s Web site.

There are about 764,000 adults and children who experience the debilitating muscular and bodily effects of cerebral palsy, according to the site.

Moustafa Abdelbaky, a co-author of the study, said its goal is to research the disorder by installing a specifically modified video game console into each of the homes of the three participants in the study.

Burdea said the patients would see an avatar of their hand on the screen and, through slight movements of their own hand, the avatar would move in a wide range of motion.

This allowed those participating to use the system within the comfort of their own home without the need to go to a physical therapy center, he said.

Abdelbaky, an electrical and computer engineering graduate student here, said going into the study, there were little to no expectations about the effectiveness of the treatment.

Burdea said the study found that patients could now open doors and carry groceries as well as other heavier objects.

Meredith Golomb, an associate professor of neurology at Indiana University School of Medicine, found out about Burdea’s work through the Internet and said the combination of her skills with Burdea’s was perfect.

“I’m a pediatric neurologist and know how to assess the kids medically,” Golomb said. “He is an engineer and knows how to get the systems working — it has been a great collaboration so far.”

Burdea previously worked with patients who suffered from strokes, using an Xbox 360 in a similar way. For this study, he said the Xbox 360 was of no use anymore and would be replaced by PlayStation 3 consoles.

While it may appear that using virtual reality to help patients recover from illness is a new method, Burdea said this sort of work has been going since 1993.

Abdelbaky said he hopes there a bright future for the use of consoles in researching serious disorders.

“The next step is to install [consoles] in one of the clinics that has a lot of kids in it, between 20 and 25 kids,” he said. “We are going to install [it] there so that kids can use the system over the course of the week. This way all of those at the clinic can use the system to help them.”

Together, Abdelbaky and Burdea agree that the ultimate goal is to provide this service to everyone affected with cerebral palsy but also to other patients with muscular disorders.

We are looking for people who want to tell their stories of living with polio.

If you…

1. came down with polio between 1927 – 1957 and before your 19th birthday2. lived in Ontario, Manitoba, Alberta, British Columbia, Nova Scotia or New Brunswick during that time and3. used any assistive devices during that time

We would like to hear from you!

We are interested in knowing about your experiences of growing up with the effects of polio and any of your stories that challenged accepted thinking and practices at that time.

We are especially looking for people who are reflective of the diversity of our communities – people with different experiences of disability and impairment, people of colour, Aboriginal people, LGBTQ people, people living in rural and urban communities, etc.

The Voicing Canadian Disability History research project is documenting the ways that people have experienced the effects of polio and how it may have influenced your participation in the disability rights movement in Canada. It is an oral history research project; we are conducting interviews as well as asking participants to share with us any significant material objects from childhood. Together, the stories and objects will help to create an archive to document this important aspect of Canadian disability history.

We are conducting interviews across Canada during the spring and summer of 2010.

Even without the new health care law, mental health advocates were getting ready to celebrate parity — a law requiring benefits for substance abuse and mental illnesses to be on par with benefits for medical illnesses.

But that law, passed in 2008 and taking full effect only this July, did not cover everyone with insurance, and it offered no help to the 32 million uninsured Americans.

Now mental health advocates are almost giddy. The law signed by President Obama last week expands parity to a much wider pool, making it possible for millions more people to get the same coverage for substance abuse and illnesses like bipolar disorder, major depression and schizophrenia as they would for, say, diabetes or cancer. There are no exact figures, but the mentally ill are more likely to be uninsured than the general population, advocates and researchers say.

“A lot of this still has to play out in terms of how parity works,” said Michael J. Fitzpatrick, executive director of the National Alliance on Mental Illness, or NAMI, an advocacy group. But the new law “can change the mental health system in America and really give families and individuals an opportunity to get a level of access to care we could only fantasize about before this became law,” he said.

Parity means that deductibles, co-payments and limits on the number of visits or days of coverage must be no more restrictive for coverage of mental illnesses and substance abuse than for coverage of medical and surgical treatments. If a plan provides for out-of-network medical benefits, it must provide out-of-network mental health benefits.

Under the new health law, employees of companies with 50 or fewer workers, whose employers were not required to comply with the existing parity law, would receive equal mental health benefits if their employers opt for the state-run exchange plans, available in 2014.

Peter Newbould, director of Congressional and political affairs at the American Psychological Association, which helped write parts of the legislation, said it was likely that the smaller companies would choose from the exchange programs, and that many may already be subject to state parity laws requiring the mental health benefits. He also said that the latest federal regulations on parity, released last month, left little wiggle room for other insurance companies to deny equal mental health benefits.

Still, in the state plans for purchase, the mental health benefits would be as generous, or as limited, as the plans are for medical health benefits. So those able to pay higher premiums are likely to get the best coverage on both fronts.

Besides increasing the number of people eligible for Medicaid, the new law requires all Medicaid coverage to include equal mental health benefits. Previously, only Medicaid-managed care plans provided that coverage.

The health care law is unlikely to affect most employees of large companies, already subject to state and federal parity requirements, although self-insured companies can opt out.

According to the National Institutes of Mental Health, one in four adults suffers from a diagnosable mental disorder in a given year, or about 58 million people. About 1 in 17 suffers from the most serious illnesses.

Fewer than half of those with mental disorders receive treatment, according to the Bazelon Center for Mental Health Law. An additional 22.2 million Americans need treatment for substance abuse or dependence, according to the latest data from the Department of Health and Human Services, from 2008.

Many of the changes affecting medical coverage, like the requirement that insurance companies provide coverage despite pre-existing conditions and the elimination of lifetime and annual limits on benefits, will have a big impact on people with mental illnesses.

Theresa Johnson, a nurse at an urban Connecticut hospital, knew that her daughter, Erica, would fall off the family’s plan with Anthem when she graduated from college last year. Ms. Johnson said she had tried to buy her daughter an individual plan with Anthem, but the company said her pre-existing mental illness, generalized anxiety disorder, made Erica “too high risk” and ineligible for coverage. (Her daughter’s pre-existing hypertension and hyperthyroidism did not make her ineligible, Ms. Johnson said she was told.)

Ms. Johnson decided to go with a Cobra option offered to children through her Anthem plan for up to three years after college graduation because she wanted to stay with Erica’s cardiologist and internist. That plan costs $605 a month, covering Erica’s therapy and the Lexapro she is taking for anxiety, and Erica is contributing $200, working three jobs. If Anthem had agreed to provide Erica with an individual insurance plan, the cost would have been roughly $250 a month, Ms. Johnson said.

“It really is discriminatory against people with mental health issues,” she said. “Being a nurse, it really kills me, it just kills me.”

Anthem declined to comment on the case because of privacy laws, but said in a statement that in some cases a pre-existing condition, or a combination of conditions, “may require us to decline coverage.”

Under the new health care law, dependent children can be covered under family plans until they are 26, effective in six months, though Ms. Johnson’s employer has announced that this will take effect for its insurance plans next January. And Erica, now 23, may face yet another period of uncertainty, because the protections for most people with pre-existing conditions do not take effect until 2014.

The new law provides for more training of what it refers to as “behavioral health workers,” but it is too soon to tell whether the mental health arena would face the kind of shortages predicted for primary care doctors, Mr. Newbould said. The law also includes a proposal to set up new nongovernmental research centers to investigate effective treatment for mental illnesses.

Because the law does not specifically define benefits, and many provisions will require many discussions on how to implement them, the devil may be in the details. “I think that’s a cliché we’re going to be hearing a lot,” Mr. Newbould said.

LUDHIANA, India -- “Ludhiana is at a high risk when it comes to polio,” revealed the consultants from WHO, who were in city on March 29 to oversee the way things are handled when it comes to pulse polio campaign. A campaign had already been launched on Sunday laying special emphasis on migrant population.

However, it is pertinent to mention that till now three cases of p1 virus have been reported from the state — one each from Jalandhar and Mohali and Ludhiana — during the last pulse polio campaign held in December. The case had come as a trouble for the health department as a one-and-a-half-year-old boy from Jagraon had been identified found suffering from the virus resulting in intervention of the WHO members.

On the condition of anonymity,, one of consultants from WHO, said, “During the recent pulse polio campaign, p1 cases have been identified from West Bengal. But as Ludhiana is an industrial town, and people from all regions including West Bengal come here, the city is at high risk of getting infection.” He added that already a special round is going on only for slums areas of the city so that in future no case surfaces from the region.

Dr Puneet Juneja, medical officer and in charge for pulse polio campaign, said, “Our target is to cover 2.15 lakh children living in slum areas of the city. As the migrant populace keep on shifting, it gets difficult for us to identify these children that is why this special drive.” He admitted that the city is indeed at high risk because of the floating population.

Dr Pradeep Sharma, medical officer, said the main emphasis is to check the p1 virus. He added that till now the incidence of pulse polio is very negligible in the state, but a few months back a case in Jammu and Kashmir has been found and presumably the lineage would be same as that of the case detected in Ludhiana.

Louisiana receive $1.4 million on March 30. It's a portion of $160 million in federal stimulus funding being distributed to several states.

The Pelican State's share is headed to the Deaf Action Center of Louisiana. The Shreveport center will use the money to purchase more than 80 Video Remote Interpreters (VRI). VRIs allows interpreting to take place from another location.

David Hylan is the center's director. He says VRIs will be beneficial in places like banks and medical facilities.

"That deaf person can walk into that bank and talk to a bank official that has VRI and be able to instantaneously speak with that bank officer," says Hylan. "So no pre-arranging, no waiting."

The Deaf Action Center of Louisiana says the hearing impaired can pay $55/hour for an interpreter, which are usually needed for at least four hours. With VRI the hearing impaired will pay about $2.50/minute for the service. The average time needed is about ten minutes.

After only 21 preview performances and 38 regular performances, the Broadway revival of William Gibson’s play “The Miracle Worker” will close next April 4 at Circle in the Square Theater, the producers David Richenthal and Dini von Mueffling said on March 28.

The show cost $2.6 million to mount and will close at a total loss to its producers and investors, a spokesman for the show said.

The story of a young Helen Keller (Abigail Breslin, pictured) learning to communicate under the guidance of her teacher, Annie Sullivan (Alison Pill, right), “The Miracle Worker” opened on March 3 to mixed reviews and never managed to attract much of an audience.

The show’s grosses during full weeks of eight performances were uneven, ranging from $165,000 to $256,000. Mr. Richenthal had secured financing this month to keep the show running through mid-April in hopes of capturing a share of the school vacation market. He then left New York to tend to health issues, leaving his decision-making authority about the show to Ms. von Mueffling, his wife.

In response to questions about why the show would not run until at least until mid-April, Ms. von Mueffling said in a statement: “In spite of additional advertising, ticket sales did not pick up as much as we thought they would. Closing is the only fiscally prudent choice, as difficult and sad a decision as it is.”

For months, Americans have obsessively focused on the state of their health care system and what is the best way to reform it. For other countries, problems with heath care and public health often have a much more dire urgency. Zaryab Iqbal, an assistant professor of political science at Pennsylvania State University, charts the impact of war on a country’s public health in her book “War and the Health of Nations,” recently released by Stanford University Press. War attacks the health of a nation in direct and indirect ways: from battlefield casualties and the destruction of infrastructure to the creation of refugees and forced migration. Here Iqbal examines what war has done to public health in Iraq.

By Zaryab Iqbal

One need look no further than Iraq’s life expectancy for a strong measure of the war’s health ramifications. The World Bank’s World Development Indicators, published in 2009, shows that life expectancy in Iraq was 65 years in 1990 and rose to 71 years by 1996, only to decline to 67 years in 2007.

This decline cannot be attributed only to casualties of war. It also reflects the numerous ways in which the conflict has weakened the country’s health care system. Consider Iraq’s fertility rate, another key measure for assessing public health. Higher fertility rates are associated with lower levels of health, as they indicate lack of access to contraception and health education, as well as health challenges for both mothers and infants. Between 2000 and 2007, the adolescent fertility rate rose from 0.63 (63 per 1000 women) to 0.86.

The war’s impact on the nation’s medical infrastructure can be seen in the trend in vaccinations against key diseases, which is a good indicator of preventive health care provisions. The percentage of the population that has been immunized against DPT, polio, and measles has steadily declined, according to the World Health Organization and UNICEF. The percentage immunized against measles dropped from about 90 percent in 1999 to less than 70 percent in 2005. Over the same period of time, immunization against polio declined from 86 percent to 66 percent, and the DPT vaccination rate fell from about 78 to 62 percent. This trend of reduced immunization rates could lead to serious repercussions for the population’s health and the prevalence of disease in the future.

The deterioration of other parts of the nation’s infrastructure also has important implications for public health. For instance, the percentage of Iraqis with access to improved water sources declined from 82 percent in 1995 to 77 percent in 2006, according to the World Bank.

The Iraq war has also caused the displacement of a large number of people. The total “population of concern” to the UN Refugee Agency (including refugees and internally displaced persons) originating in Iraq increased from 466,000 in 2002 to 4.8 million in 2008. This tenfold increase in displacement could lead to health consequences not just in Iraq but in refugee-recipient states such as Jordan, Syria, and Saudi Arabia.

Public health clearly suffers from armed conflict, but it will be many years before we can begin to get a clear idea of the extent to which Iraqi society has been affected by this war.

Tuesday, March 30, 2010

For lawyers offering free legal information at large immigration detention centers in remote parts of Texas, the task is difficult enough: coaching hundreds of detainees on how to represent themselves at assembly-line deportation hearings. But the lawyers soon discover a more daunting problem: many detainees are too mentally ill or mentally disabled to understand anything.

The detainees, mostly apprehended in New York and other Northeastern cities, some right from mental hospitals, have often been moved to Texas without medication or medical records, far from relatives and mental health workers who know their histories. Their mental incompetence is routinely ignored by immigration judges and deportation officers, who are under pressure to handle rising caseloads and meet government quotas.

These are among the findings of a yearlong examination of the way the nation’s immigration detention system handles the mentally disabled in Texas, where 29 percent of all detainees are held while the government tries to deport them. The study, conducted by Texas Appleseed, a public interest law center, and Akin Gump, a corporate law firm, documents mistreatment at every stage of the process.

Among many examples in the 88-page report, to be released Tuesday, is that of a 50-year-old legal permanent resident with schizophrenia who had lived in New York City since 1974. In November, a New York criminal court declared him incompetent to stand trial on a trespassing charge and ordered him to serve 90 days in a mental institution. Instead, he was transferred to the Willacy County Regional Detention Facility in South Texas, to face a deportation proceeding without counsel — so abruptly, the report said, that his family and lawyer did not know what had happened.

At the detention center, he received no medication for weeks, and in March, he was deported to the Dominican Republic. “My mother is devastated,” his sister, Janet Jiminez, said on Sunday. “She says he will die out there on the streets.”

“I’ve been a U.S. citizen for many, many years,” Ms. Jiminez added. “If we have a law system and the law system has declared that you are incompetent and should be taken to a mental hospital, why are you taken to Texas to be deported?”

Immigration and Customs Enforcement, the report said, routinely ignores its discretionary authority to leave such detainees in community settings rather than lock them up, at great expense, in distant jails where they can rapidly deteriorate.

The agency is reviewing the report, a spokesman, Brian P. Hale, said Monday, adding that “in cases where ICE is required by law to detain certain aliens with serious medical and mental health issues, we work to ensure the person receives sound, appropriate and timely care.”

A recent government memorandum shows that agents are under intense pressure to increase detentions and deportations. In the memo, James M. Chaparro, the Obama administration’s chief of detention and removal operations, congratulated agents for reaching the agency’s goal of “150,000 criminal alien removals” for the year ending Sept. 30. But Mr. Chaparro urged them to overcome a shortfall in the goal of 400,000 deportations by making maximum use of detention slots, including an additional 3,000 this year.

Despite the administration’s vow to focus resources on detaining and deporting the most dangerous criminals, the Feb. 22 memorandum, posted online Saturday by The Washington Post, instructed agents to pick up the pace of deportations by detaining more noncitizens suspected only of unauthorized residence. Such illegal immigrants can typically be deported more quickly than legal immigrants with criminal convictions.

The publication of the memo clearly embarrassed the administration. A spokesman, Sean Smith, said that “our focus continues to be on the criminal side,” and that Mr. Chaparro was reprimanded Monday by John Morton, the chief of the immigration enforcement agency, at a meeting with immigrant advocates. The memo, Mr. Smith added, was sent without Mr. Morton’s approval and “is completely unrelated” to the findings of the study.

Ann Baddour, who directed the study, disagreed. “Setting these kinds of quotas only encourages the process of detaining people and taking them far from their infrastructure,” she said. “When you take a mentally ill person from New York to rural Texas, you’re basically setting them up for almost certain deportation.”

Another example in the report is that of a Haitian man found incompetent to stand trial in an assault case and sent to a state mental hospital in Boston. The day he arrived, however, immigration agents sent him in shackles and without medical records to the Port Isabel Detention Center near Los Fresnos, Tex.

In that case, the man was eventually returned to the Boston hospital, said Maunica Sthanki, a lawyer involved in the study. More typical, she said, is the mentally disabled refugee from Southeast Asia who was wrongly taken into custody in Providence, R.I., sent to Texas, then abruptly released without notice at a rural gas station at 11 p.m.

The report details several such releases: a schizophrenic woman who spoke only Russian, left in a dangerous area at 1 a.m.; a man lost for a week on his way back from Texas to his family in Maryland; a delusional man who was deported four days earlier than planned, though his parents had arranged for his voluntary departure to Mexico, where his mother was to pick him up.

Two years later, the man has not been found, but a body matching his description is in a morgue in Mexico.

ISLAMORADA, Fla. -- In 1971, a doctor told Barbara Edgar she might as well put her 9-day-old daughter, Cinnamon, in an institution right away because that's where children with Down syndrome end up.

``That was horrible to say,'' said Jean Eyster, Cinnamon's grandmother. ``And if it happened, oh, what we would have missed.''

Today, Cinnamon Edgar (pictured) -- now 38 -- has her own business, Florida Keys Art by Cinnamon. She sells her colorful watercolor paintings, note cards and scenic photography of sunsets, palm trees and wildlife to about 55 clients from Key Largo to Marathon. Four years into the business, she's sold about 20,000 note cards and art pieces at luxury resort gift shops, souvenir stores, visitor centers and art festivals.

One of her photos -- of a palm-tree lined beach -- adorned the cover of The Real Yellow Pages in 2008 for the Florida Keys.

Edgar -- who splits her time living with her mother and stepfather, and her grandparents -- solicits clients by phone and in person, keeps track of accounts using a Quickbooks computer program and does her own folding, sorting, envelope-stuffing and labeling.

Her brand of charm also helps close sales. At a charity event, her vibrant watercolor of a volcano was on the auction block. When the bidding reached $300, the 4-foot-10-inch Edgar stood up and pointed her thumbs toward the ceiling.

``Higher, higher,'' she encouraged the crowd. The painting sold for $500.

Judy Hull, executive director of the Islamorada Chamber of Commerce, said Edgar's art is popular because of her use of color -- and her personality.

``When I think of Cinnamon, I think of a genuine sweet person,'' Hull said. ``A lot of her art portrays that sweetness.''

It was her kindness that comforted a U.S. Marine corporal who was stationed in Iraq during the Gulf War. In 1990, Ted Segar chose a letter postmarked Florida from a box of hundreds addressed to ``any service member.'' They became pen pals.

``Her letters and cards were so upbeat, and a great source of comfort to know we had somebody in our corner who cared about us,'' Segar said by phone from New York.

But it wasn't until after the war, when Segar returned home to Miami and stopped to meet Edgar, that he learned that she has Down syndrome, a genetic disorder that delays physical and intellectual development.

``Never in a million years would I have guessed,'' Segar said. ``Her writing was exemplary.''

Edgar's mother, Barbara, said she refused to let ``can't'' enter her daughter's vocabulary. Edgar initially attended public school but, by age 8, it was clear she needed specialized schooling, so her mother enrolled her at the Marian Center, a Catholic school for children with developmental disabilities in Miami Gardens.

The only thing Edgar has tackled but been unable to conquer is driving. Her mother said her reflexes are too slow for the busy traffic of the Keys.

The idea of the art business goes back a decade to when Edgar -- bored with the repetition of adult workshops. Her mother let Edgar quit school only if she found something productive to do at home. That led to a University of South Florida scholarship that provided guidance for developmentally challenged persons starting small businesses.

Most of her photographs are taken at her grandparents' oceanfront home in the Keys. On mornings with an especially beautiful sunrise, Keys historian Irving Eyster will wake his granddaughter so she can shoot a picture that might grace a notecard or other item.

And Edgar remains determined to push her business to the next level. This year, she moved into cyberspace, with her website: www.CinnamonsFloridaKeysArt.com.

A prototype hydraulic and latching mechanism (pictured) could bring to blind computer users something they've never had before: a full-page. Right now, refreshable Braille displays are slow and unwieldy, allowing a user access to the equivalent of one line of text at a time. For this reason, the vast majority of Internet content and computer applications are unavailable to the blind. What's worse, these displays are often horribly expensive.

From North Carolina State University, where the research is taking place: "The mechanism would be made of an electroactive polymer that is very resilient and inexpensive, when compared to current Braille display technologies."

"This material will allow us to raise dots to the correct height, so they can be read," says Dr. Peichun Yang, a postdoctoral research associate at NC State and co-author of the paper. "Once the dots are raised, a latching mechanism would support the weight being applied by a person's fingers as the dots are read. The material also responds quickly, allowing a reader to scroll through a document or Web site quickly."

Try to imagine how different your life would be if you didn't have access to the Internet — or could only crawl through select segments of it one line at a time. More than just blogs and news sites, it's probably the first place anyone goes if they need to find help, medical advice, job opportunities and more. Dr. Yang, blind himself, hopes this technology will open up new horizons: "Reading Braille is essential to allowing blind people to find employment," he said in the release. "We're optimistic that this technology will give the blind additional opportunities in this area."

LE BLANC, France - The Little Sisters Disciples of the Lamb are a contemplative religious community in France that enables girls with Down syndrome to respond to a religious vocation.

The tiny community, founded in 1985 and based in Le Blanc, in the diocese of Bourges, is made up of seven sisters, five of whom have Down syndrome.

In a world where up to 90 percent of Down syndrome children are aborted, the Prioress of the Little Sisters Disciples of the Lamb says the order exists, "To allow those who have the ‘last place’ in the world, to hold in the Church the exceptional place of spouses of Jesus Christ. To allow those who depend on others for their everyday life to take in charge, in their prayer, the intentions that are entrusted to them. To allow those whose life is held in contempt to the extent of being in danger from a culture of death, to witness by their consecration to the Gospel of Life."

The possibility of young women with Down syndrome being enabled to realize their religious vocation depends on the support of sisters without the disability, who have responded to a call to consecrate themselves to God with their disabled sisters and to form one community with them.

A leaflet produced by the community describes the Little Sisters Disciples of the Lamb as an order "Guided by the wisdom of St Benedict," and "following every day the ‘little way’ taught by Saint Therese" that "teaches our little disabled sisters the manual labour necessary for their development. We live poverty in putting ourselves at their disposal. With them, we share the work of everyday life."

"The office, adoration and the praying of the rosary are adapted to their rhythm and their capacities. In a spirit of silence, our prayer feeds every day on the Eucharist and on the meditation of the Gospel."

"Today, more girls with Down Syndrome are knocking at our door. To respond to their request, our family needs new vocations. Vocations to share a contemplative life with 'the smallest in the Kingdom'."

The order's vocation leaflet encourages "young girls touched by the spirit of poverty and dedication, ready to offer a whole existence to the service of Christ in the person of their sisters with Down Syndrome," to visit the priory, which is close to the abbey of Fontgombault, for a period of vocational discernment.

MY DEAF FAMILY is the story of Jared, 15 and his family, The Firls, who live and love like any family except that Jared is hearing and communicates using sign language with his deaf family.

This philosophy of signing versus speaking, between a hearing son and his deaf parents, is the driving force to the stories in MY DEAF FAMILY, particularly as Jared grows through his high school years and explores the hearing world outside of his home with cars, hearing friends and dating. The parents insist that being deaf is something to be proud of and it defines who they are; while dealing with a hearing world that too often insists that being deaf is a disability.

Solo One Productions (Academy Award winning actress/producer Marlee Matlin & Jack Jason, CODA) is looking for a family, specifically a CODA (Children of Deaf Adult) family with one or two young CODA’s who come from a large Deaf family (ideally, multi-generational Deaf) as a subjects of a reality show; in the vein of “Little People, Big World” on The Learning Channel.

The winner of the BBC's Dancing On Wheels show has accused the Corporation of discrimination, saying it refused to pay disabled contestants a decent amount, even though celebrity participants received generous fees.

The BBC3 offshoot from Strictly Come Dancing paired James O'Shea (pictured) and five other wheelchair-bound dancers with stars including swimmer Mark Foster, singer Heather Small and rugby player Martin Offiah.

But Mr O'Shea, who won with TV presenter Caroline Flack, has complained about his 'derisory' pay.

He also claims a cameraman was highly abusive, threatening to 'gaffer tape your arms together, throw you into the Thames so only your nose is just above the water and then push you down every couple of minutes until you've learned your lesson'.

The outburst allegedly followed a private dispute in which Mr O'Shea claims the cameramen wanted to film a contestant who was upset.

Mr O'Shea, 32, says the BBC and programme makers Fever gave him just £150 a week, plus a small meal allowance and accommodation, during the 13 weeks of preparation and filming.

The care assistant and professional wheelchair dancer is angry at the discrepancy in the amount offered to the competitors compared with the celebrities' fees, thought to be thousands of pounds.

He said: 'When I won the competition, I asked the producers if they could look at anyone and tell them they're only worth £150 a week.

'I told them that I wanted at least double that amount for all the competitors.

'It makes no sense. They're trying to make a TV show to make a good portrayal of disabled people, yet they're not going to pay them. It is as if their view was, "They're not worth it so we can treat them like ****." It's clear discrimination.'

Mr O'Shea says he only took part in the show after he was promised £450 a week compensation for loss of earnings.

Strictly Come Dancing professionals Ola and James Jordan were judges, while big names Brian Fortuna and Kristina Rihanoff worked on the choreography.

The BBC justified the lack of more cash for competitors by claiming that the programme was a documentary rather than an entertainment show.

A spokeswoman for the BBC said that all six wheelchair competitors had received £150 per week plus expenses.

She added: 'This was a factual, observational documentary with an element of entertainment. For a programme like this we would not generally pay contributors, although we cover expenses.

'Celebrities are slightly different. They are paid fees because they help drive the audience.'

Mr O'Shea concedes that the cameraman said he had been joking when he made his threat to throw him in the river and later apologised.

He has also received a letter from Harry Lansdown, commissioning editor for BBC3 features, offering to hold talks with him.

In the letter, Mr Lansdown wrote that 'complaints of bullying and threats of physical torture by the production team' would be treated with 'the utmost gravity'. Last night, a BBC spokeswoman said: 'We strongly reject any suggestion that we treated the contestants in this show differently to those in any other factual entertainment programme.

'As is usual practice, we agreed in advance that all contributors would have their expenses paid and, on top of this, they were given a weekly contribution in recognition of the additional time the contestants committed to the series.'

LIVINGSTON, N.J. -- Danielle (right in picture) is seated at a cafeteria table, a visitor to a Livingston High School club built around the special needs of her and her classmates from The Children’s Institute, a school for those with socialization and language disorders often born of autism. And she’s brimming with revelations about what makes Danielle, well Danielle.

"I can make peas. I can make cookies. I can make brownies. I can make cakes," 18-year-old Danielle says.

Then, like life itself, the topic suddenly takes a turn.

"Stay focused and concentrate," she says. "Learn how to dress for an interview. Let’s just say I’m learning about the real things in life." It is a trying time for Danielle and her mother, Janet Clark, who is going through the kind of anxiety any parent goes through when a child is becoming an adult — only more so. With her youngest daughter just a few years from graduating from The Children’s Institute in Verona — Danielle’s home away from home since the age of 4 — there is fear that she will be set adrift alone with her autism.

To help her daughter deal with this transition, Clark has attended an evening seminar that will help Danielle eventually find a place of her own. Similar hand-holding seminars are branching out across New Jersey in the coming weeks, beginning with "Life Line for the Journey," directed at parents of children up to 14; "Pathways to Adult Life," directed at those with children age 14-19; and "Preparation for Life After 21," for those parents with children ages 19-21.

"What’s going to happen when that school bus stops coming?" said Lorraine B’Sylva-Lee, who conducts the seminars at TCI and elsewhere for the Family Support Center of New Jersey.

"There are no mandates for adult services. ... We have to muster the strength even though it seems hopeless around every corner."

Clark, as much as Danielle, is at a crossroads, a textbook case of what B’Sylva-Lee deals with on the speaker’s circuit in a nation where autism now affects one in 91 children, according to a new report from the federal Health Resources and Services Administration.

It’s a corner Loretta Boronat has already turned, in some ways painfully so.

All those years when her autistic son Danny was little, she was a cheerleader for how much he could grow and learn. But when he turned 18, she and her husband did an about-face and told the courts he was not capable of taking care of himself so they could become his legal guardian.

"Once he turned 18, then he’s legal … If there were legal matters, financial matters, he’s just not capable of that," she said. "What you have to do — which is kind of painful — is to do the opposite of all those previous years when ... I tried to look at the most positive aspects. You go from being his greatest advocate. ... You have to say he’s totally disabled, he has no skills, he needs our care."

Now 23, Danny is working full-time at a Montclair community health center, where he began part-time in a so-called shelter workshop while still a student at The Children’s Institute.

"Would this be what you hoped and dreamed for when he was young? I’d say, ‘No," she said. But, she said, Danny is surrounded by caring and considerate people who appreciate his work ethic. He even gets transportation to and from work.

As for Danny’s living arrangements, she doesn’t expect him to move out of the family’s West Caldwell home and into an assisted living environment anytime soon. "Yeah, there’s a waiting list for 8,000 people, I mean, last time I checked."

Clark, meanwhile, has already altered her life to ease Danielle’s transition, moving in 2006 from Orange to suburban Caldwell, if only so her daughter can walk to places without the threat of urban traffic.

One summer, Danielle worked as a volunteer at the Caldwell Public Library. "The more interaction she has with people, the better off she’ll be," she said.

Her journey through the transition years will be uncharted.

"It’s almost like a Lewis and Clark expedition," said Clark, referring to the explorers who in 1804 embarked on a cross-continental journey. "You don’t know what’s out there. ... You make the rules as you go along."

Mental health and addiction services in Wellington are to take a funding cut, sparking fears of more suicides and that seriously mentally ill people will have nowhere to go.

The funding is being cut despite the Government saying it had increased mental health funding by $85 million this financial year.

Capital and Coast and Hutt Valley district health boards said they were looking at making savings in mental health and addiction services.

Marion Blake, chief executive for Platform, the umbrella group for many of the country's mental health and addiction non-government organisations, said she understood Wellington's and Hutt Valley's cuts were "almost certain" but cuts were also on the cards nationwide.

Ms Blake said the organisations ranged from addiction services in prisons to employment support, counselling, and community support workers for people with addiction or mental health problems.

Each day in Wellington alone, at least 1500 people used the services that would be affected if funding cuts went through.

She understood Capital and Coast was looking to cut $2m annual funding from mental health and addiction services. She predicted an increase in suicides, and said some patients would end up living on the streets. "People will become more isolated and will become more acutely unwell and they will end up in hospital."

Capital and Coast planning and funding director Sandra Williams said the health board had a "multimillion-dollar deficit" and had to make savings.

"We have to recover at least $10m a year from our community and primary health services, some of which will be in our mental health and addiction services."

There would be an effort to keep frontline services for those needing them most, she said, and the cuts could come in the form of restructuring, reducing, or combining services.

Hutt Valley board acting chief executive Michael Hundleby said it was looking at contracts with mental health, drug, and alcohol providers, with a total value of about $300,000.

Aspire Inc general manager Karin Keith said she had been told its Newtown drop-in centre, the Clubhouse, would lose $55,000 in annual funding. It would almost certainly have to close because rent would not be covered, she said.

Aspire cared for those from the 3 per cent of the population with the most severe mental illness, many of whom were recently discharged from hospital.

It dealt with about 60 people each day and offered advocacy services, activities, tea, coffee, and food.

"It's somewhere for them to go that's safe during the day," Mrs Keith said. If the Clubhouse shut, its clients would either be out on the streets during the day or would not leave their homes.

Ad Feedback Clubhouse support worker Conray Samuel, 47, a previous client of the Clubhouse, said he had "at my worst" been diagnosed with paranoid schizophrenia.

The centre was "somewhere safe to come, somewhere to go during the day". It provided a place "to get out of one's flat, to mix with similar people, which is a very important thing".

A spokesman for Associate Health Minister Jonathan Coleman said that in the last Budget, the Government had increased mental health funding by $85 million for the financial year, to $1.81 billion. It was up to individual health boards how they spent that money.

The Health Ministry said the cuts were "not a national initiative" and involved a decision made by individual health boards.

A young man was cleaning an elevator at a local hotel recently when some guests entered the car.

"Say hi," said a young woman standing near the man. She wasn't being rude; she was just doing her job. The woman was a Duquesne University student who was assigned to mentor the young man, who had a high-functioning form of autism and was working at his first full-time employment.

Encounters like this one are a key part of the program devised by Duquesne special education professor Ann X. Huang (pictured) to help people with autism succeed in the workplace.

Young men with Asperger syndrome or other forms of high-functioning autism, a neurobiological disorder that affects communication skills, can often learn the skills of a job fairly easily. What they struggle with is how to behave with people.

Dr. Huang's solution? Pair them with mentors who will stay with them throughout the work shift and coach them on how to interact with bosses, co-workers and customers.

After getting a pilot grant two years ago from the state Department of Public Welfare, Dr. Huang has now received a $25,000 grant from the advocacy group Autism Speaks to extend the program to Wesley Spectrum Services, a local agency that works with the families of developmentally disabled children.

Although the program's scope is modest -- it will be able to help only a few children to start with -- it is tackling one of the most critical and overlooked problems in the world of autism.

As children on the autism spectrum enter their teens, even those who can finish college often have extreme difficulty finding work. The unemployment rate for people with autism is estimated at 80 percent in America, and of the 20 percent who work, most are in part-time jobs, says Peter Bell, executive vice president of programs and services at Autism Speaks.

The challenge is so great that a new group called Advancing Futures for Adults with Autism was begun last year. At its national town hall meeting in November, Mr. Bell, speaking of his own teenage son, posed the questions that worry many families of young adults with autism.

"What happens when the school bus stops coming to our house? Where will he live? Will he have a job? Who will take care of him when we are not around? These questions weigh heavily on us."

Dr. Huang said the answers to those questions do not necessarily lie with teaching such children how to perform a job, but how to treat others while they're on the job.

"Some of them do not greet people mutually. People will say hi, but they will respond with no eye contact, or they might not respond at all," she said.

"On other occasions, they might be too nice to other people -- they don't realize they should keep a certain distance. Some of them are very sensitive to sensory stimuli, so if they like the smell of someone else's shampoo they might come too close to the other person and that might offend some people or scare them."

One good way to meet those challenges, she said, is to pair the autistic workers, most of them young men, with college-age peers who understand all those unwritten rules of social engagement.

In her pilot programs, Dr. Huang has tended to use young women as mentors, because the autistic men respond better to them. But for certain situations, such as when the men are in a public setting, she prefers male mentors.

One example: on a public bus trip, an autistic man was very attracted to a young woman who had boarded the bus. "We say to these young men, 'If you see a woman, you should keep a certain distance from her and you should not stare at her all the time.' A lot of autistic people have good memories so they can remember those rules, but it is sometimes hard for them to generalize the behavior."

In this case, she said, the young man told his mentor that even though he knew the rules, he still wanted to sit near the young woman, but his male mentor physically pulled him back.

Dr. Huang's pilot program worked with the St. Anthony School Programs, a Catholic system for children with Down syndrome, autism and other disabilities. She is now trying to extend the mentoring system to Wesley Spectrum Services, which works with more than 7,000 children across Western Pennsylvania.

So far, the autistic students have worked at Duquesne's cafeteria, law school and copying center, as well as at the Pittsburgh Marriott City Center housekeeping program and a few other work sites.

Finding willing employers is crucial, she said, but even when she can do that, there is sometimes still the issue of insensitive co-workers.

She went to observe one of her students at a local grocery store recently, where he was bagging at a checkout counter. The boy has Down syndrome and autism, she said, so he is both friendly and tends to repeat himself.

"He was saying, 'It's fun outside, do you like it?' He has good verbal communication and he was trying to greet people, but the problem is he repeats things again and again and again." It clearly irritated the cashier, said Dr. Huang, who did not let on that she knew the young man.

"The cashier was not very happy about the way he was acting. I had bought some eggs, and she asked if I wanted her to put my eggs in a bag, because 'I don't want him to ruin your eggs.' I said 'No, no, no, he's doing fine.'

"He was doing his job very well. The only part that embarrassed the cashier was that he was very friendly and didn't know the boundaries."

Dr. Huang never expected to end up doing this kind of work. When she was 24, she was a successful young English teacher at an elite school in Beijing for the children of wealthy parents. Then, she happened to visit a school for developmentally disabled children, and her life changed.

"The school I was teaching in was so different from this one, and it totally changed my mind. In Chinese society, we always think out of sight, out of mind. But I decided we cannot ignore them."

She applied for a graduate program at Tennessee Tech University, where her mentor specialized in autism, and joined the Duquesne faculty after getting her Ph.D.

Her only frustration has been that her funds for the mentoring program have been so limited. "If other agencies would like to replicate this program or other school districts were interested in developing such a program, I'd be more than happy to help them develop it.

"I hate to refuse parents. They ask, 'How can we get our kids into your program?' and too often, I have to say 'I'm so sorry, the money is limited.' "

If all goes according to plan, New Jersey’s first legally grown marijuana plants will be harvested this fall from greenhouses, where they will have been growing for months under the gaze of cameras and security guards. The plants will be dried, packaged and readied for purchase at six licensed facilities by thousands of registered patients who have debilitating illnesses.

The product will not be called Garden State Red or Jersey Gold or anything like that. But when that first joint is lit, New Jersey officially will have ventured where none of the other 13 states that legalized marijuana consumption for medicinal purposes has gone before: taking the lead role in the pot manufacturing and distribution business.

Queasy over the idea of filling the Garden State with scores of backyard pot plants, lawmakers in January passed the most restrictive medical marijuana statute in the nation by banning patients, their families and other caregivers from growing their own. But for state officials who must implement the law, this tough stance raises questions so complicated they wonder if they’ll be able to meet this fall’s deadline.

Consider:

• In the next six months, state health officials must decide who should be permitted to grow the drug and where, how it should be tested for potency and safety, and in which communities it will be sold. The health department has informally approached Rutgers University’s School of Environmental and Biological Sciences to play an unspecified role, but no discussions have taken place.

• Officials will have to devise a system to screen the hundreds of aspiring marijuana entrepreneurs who have called looking to break into an industry that has been thriving in other states.

• And they will have to make sure they don’t run afoul of the federal and state laws that still recognize marijuana possession and distribution as crimes.

Advocates say at least 5,000 New Jerseyans with debilitating diseases are waiting for the state to implement the new law. One group predicts that number will eventually top 30,000.

"I am tired of feeling like a criminal when obtaining and using marijuana — which I always use responsibly and away from my children — just to lead a normal life," said Chuck Kwiatkowski of Hazlet, a 38-year-old father of three who left his computer programming job at AT&T when multiple sclerosis disabled him. "Each day that goes by, at least 5,000 people miss their medication."

Speaking at her Senate confirmation two weeks ago, acting Health and Senior Services Commissioner Poonam Alaigh acknowledged the department was still in the early stages of designing the program and was "having some issues."

"We are rigorously trying to meet the time frame, but the first priority is to create a structure" that will be the "most restrictive, in the way the law was meant to be," said Alaigh.

Bill sponsor Sen. Nicholas Scutari (D-Union) said both Alaigh and Gov. Chris Christie asked to extend the nine-month start-up period required under the law.

"I said no," Scutari said. "I want to see them make progress. I’m confident the new commissioner will take the bull by the horns."

A wary supporter at best, Christie, a former U.S. attorney, inherited the New Jersey Compassionate Use Medical Marijuana Act from Gov. Jon Corzine, who signed it into law the day before Christie’s inauguration.

Nancy Fedder (pictured), a 62-year-old Hillsborough resident with multiple sclerosis, said she has bought marijuana illegally for 20 years to relieve the fiery pain and muscle spasms in her legs and feet. She said she is discouraged that the law’s implementation is in the hands of a governor who has expressed concerns about it.

"I know a lot of people who are waiting for this law," Fedder said. "We are not holding our breath, because Mr. Christie is not going to push this along. He’s a cop by nature. I find it hard to believe he will implement it. All he has to do is slow this down."

Michael Drewniak, Christie’s press secretary, insists the governor’s request for an extension to implement the law is not about "trying to slow anything down."

"There are security and legal issues that have to be attended to," he said. "We don’t want to become the California model."

Angst over California — where dispensaries are as commonplace in some communities as coffee bars, and federal officials have launched raids — is one reason New Jersey lawmakers said registered users will not be allowed to grow pot at home.

Clamping down on the supply will make New Jersey the first state in the nation to provide medical marijuana through its own centralized production and distribution system.

The law initially limits the distribution sites, also known as "alternative treatment centers," to six locations run by nonprofit organizations, with the state deciding whether to license more centers run by both for-profit and nonprofit entities.

"We are in very new territory," said Bradley Hillman, senior associate director of the New Jersey Agricultural Experiment Station at Rutgers. "Every other state has some level of growth allowed by individuals. It butts up against some major issues — how state law will butt up against fed law. It’s my understanding even in the various states that have state laws allowing growth for personal use, you can still run afoul of federal agencies."

New Mexico, for example, scrapped plans three years ago for a state-managed system to produce and distribute medical marijuana and decided to allow people to grow their own because officials feared state employees would be "subject to potential federal prosecution." The state, which still allows people to grow their own, recently licensed five dispensaries that serve about 800 registered medical marijuana users.

Robert Goodman, executive director of the Agricultural Experiment Station at Rutgers, said there are many ways the school could help. It could oversee the growth and cultivation, provide land and teach inexperienced growers, or offer guidance through research. Any facility that grows pot, they cautioned, would require 24-hour safeguards against theft.

But Rutgers University officials say they are wary of federal laws.

"We wouldn’t even attempt to proceed with this unless we first checked it out legally," said associate director Margaret Brennan. "In New Jersey where you talk about just six locations that are growing huge quantities, the state itself may have an issue with the federal government."

Last fall, U.S. Attorney General Eric Holder eased states’ anxiety by announcing that raiding medical marijuana facilities would be a low priority for federal agents. Paul Fishman, the U.S. attorney for New Jersey, said his office "will not focus our federal law enforcement efforts on ... individuals who are in clear and unambiguous compliance with existing New Jersey law." But, he said, the office will prosecute those who try to use the law as a cover.

As state officials sort through these legal issues, they plan to set rules to deal with people who are looking to make money from medical marijuana.

"I am sure state government is going to be hugely under pressure to let entrepreneurs find their way into this new opportunity," Goodman said.

Brennan added: "The economics are huge. There is a tremendous amount of potential for the state and whoever is awarded contracts to be growing it."

J.B. Woods and his wife, Mary, operate a Colorado insurance company that is one of five in the world specializing in policies for marijuana dispensaries. He said they hope to break into the New Jersey market.

Woods said the law will bring an "enormous economic benefit," because growing and dispensing pot requires facilities, workers and spin-off businesses.

New Jersey’s major business groups won’t say who wants to get in on the medical marijuana industry, and state officials won’t disclose who is knocking on the door.

Scutari said the economic benefit is another reason New Jersey should implement the law on time. He believes New Jersey, like other states, should tax medical marijuana. The law doesn’t provide any state funding for the program; he said it would pay for itself through charging fees for participants, dispensaries and even registered caregivers, who will need police background checks.

The Coalition for Medical Marijuana NJ has held meetings for patients, entrepreneurs and health care workers, but chief executive director Ken Wolski says the state has not responded to the group’s request to help craft the rules.

One of the first steps the state is expected to take is creating a patient registry, allowing people to apply once their doctors attest they suffer from one of a list of specific serious illnesses and cannot be helped by traditional medicine. Chris Goldstein, a coalition spokesman, said a registration card would be "the most important thing from a law and public safety standpoint. They want to see registered patients with the card in their pocket so there is no question about who is registered."

Kwiatkowski said his doctor has promised to write a recommendation for him when it comes time to apply. For now, he’ll continue risking arrest by buying pot illegally because he says it helps him function — and makes him a better parent.

"They have no idea what’s going on," Kwiatkowski said of his three daughters, ages 9, 7 and 4. "Piggyback rides — that’s what my 4-year-old wants. And she’s getting them."

British author Mark Haddon (pictured) interviewed by Carole Cadwalladr of The Observerin the UK:

You've written novels, children books and TV dramas – why a play now?

I've been thinking about doing a play for about seven years and getting nowhere. What I love about the theatre is that it's always metaphorical. It's like going back to being a kid again, and we're all pretending in a room. Sometimes, when the pretending really works, I find it much, much more moving than something on film.

Are there certain similarities between your debut play, Polar Bears, and your novel The Curious Incident of the Dog in the Night-time? They're both mystery stories, for example, aren't they?

Polar Bears has got a mystery story to it, but I tell you what, it's bloody mysterious. If we've done our job right, people are going to come out of the theatre saying, "Wow, what was that about?" What we want is for people to come out feeling as if they've been hit around the head.

And the main character has an affliction that affects the way she sees the world? In Curious Incident it was Asperger's, in this case it's manic depression...

Everyone sees the world differently. One of the things that's interesting about people who have label-able conditions is that we recognise bits of ourselves in them, don't we? I wish I'd never allowed the publishers to put the word "Asperger's" on the cover of Curious Incident. It became an issue book, and I found myself repeatedly saying: it's not really about Asperger's, it's about difference. It's about acceptance of others. It's about that sidelong, Martian view of the world. I slightly worry that if I say too much about Polar Bears, people will say, "Oh, it's a mental-health issue play."Where does your interest in the mind, and its disorders, stem from?

I've realised that there are two subjects at the centre of everything that I do: the first is the waywardness of the human mind. You can see that in everything that I've done. Coming Down the Mountain [a television drama] was about Down's syndrome. There's extreme anxiety in A Spot of Bother. And there's that-which-I'm-loath-to-call-Asperger's in Curious Incident. And these things do not happen in isolation: the way that you get to understand someone's mind is by looking at the relationships between them and the world around them.

As well as your professional interest in the mind, you also used to volunteer, didn't you, with people suffering from mental and physical disabilities?

In a very previous life. After three years at Oxford I wanted to do something that wasn't about me, frankly. It was before Margaret Thatcher made students boring by means of severe economic pressure.

On the subject of politicians, I couldn't help noticing on your blog that you've been quite rude about David Cameron...

They're a cabal of very wealthy people who are probably playing to a gallery of other wealthy people. Whatever they say in public. I went to boarding school and then I went to Oxford, and I know how easy it is for certain groups of people to become wholly insulated from ordinary life.

You said once that you'd experienced "industrial-strength mood swings". Did that inform your play's subject?

I'm a writer! If you work in an office it dampens you. It makes you fit a routine. The effect of being a writer is not dissimilar to being long-term unemployed. And everyone knows that is not good for you. There are kids who fit in, very naturally, and the world is not puzzling really for them. And then there's another group who feel a bit uneasy in themselves. If you're in the first group, you're not going to become a writer, you'll be a fighter pilot or a bank robber. The main impetus for being a writer is thinking, "I could invent another world. I'm not terribly keen on this one."

So do you feel you fit better into the world these days?

Yeah. Well, I wouldn't fit very well as a failed writer. That helps, doesn't it?

Does it? You've been both not-so-successful, and extremely successful. What are the pros and cons of each?

The pros are you can live in a bigger house and buy as many CDs as you want and you don't panic about money. And the cons... I have a vivid memory of when Curious Incident took off, which was very early on, before it was published here, and it was quite scary. It's like having one of those dreams in which your car starts to fly. They're great, but if your car starts to fly in real life, it scares the living daylights out of you. And you know fairly quickly whether it will wreck your life, or whether you're going to ignore it. These days I ignore it completely.

You said in an early interview that you'd always felt like you had your nose pressed to the window of the House of Literature and they were all in there – Ian McEwan was in the kitchen, and Jeanette Winterson was washing up. Are you there too now, peeling the potatoes?

You realise eventually there is no place like that. What keeps you writing is that you don't ever enter a place that feels like home at last. You're still going uphill. There's still a little glowing light in the distance that you're trying to get to. I was writing something recently and I was chuckling at something I'd written, and my wife looked across and said, "Do you think that real writers do that?" And I didn't even notice it was funny at first, because I still think, "Oh, one day I'll be a real writer."

About Me

I am full-time Mass Communication faculty at Towson University in Maryland and adjunct faculty in the City University of New York (CUNY) Master's in Disability Studies program.
I research media and disability issues and wrote a 2010 book on the subject: Representing Disability in an Ableist World: Essays on Mass Media, published by Advocado Press.
The media have real power to define what the public knows about disability and that's what I research.